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Getting Involved in Your Health Care

Part Two of Three in Project Inform's "After You've Tested Positive" Booklet

July 2011

Getting Into Care as Soon as Possible

It's very important to see a doctor as soon as possible after your diagnosis. This does not necessarily mean you should start HIV treatment right away, but you and your doctor need to assess your health and begin to plan for the future. Getting into care can improve your quality of life even before you start treatment.

Some issues in your life may make it hard for you to see a doctor regularly, such as drug and/or alcohol use, unstable housing or lack of insurance and other resources. These issues can be addressed as you establish your HIV care, and many resources are available to help. Your doctor may be able to help you or refer you to a case manager or social worker. For more information, read the section titled "Lining up support".

Many people develop a more assertive attitude about their well-being when they find out they have HIV. Because treating HIV disease can be complicated, making decisions about when, how and whether to start treatment isn't always easy. One positive step is to actively participate in your health care and in making treatment decisions. This means that both you and your health provider(s) learn how to work together and communicate thoughtfully with one another.

Developing a Relationship With Your Doctor(s)

Developing Relationships With Your Doctor(s)

Many people simply do what they're told when it comes to health. So participating with your doctor -- on all aspects of health -- may be a new experience. It may be uncomfortable at first, and some doctors are unfamiliar with patients asking questions and may need practice with this type of relationship as well.

However, people who take a more active role and participate in making their own health care decisions tend to have better overall health. You may also find that developing a closer relationship with other staff in your doctor's office, like a nurse practitioner (NP) or physician's assistant (PA), can be helpful as they may have more time to spend with you during an appointment. Other medical professionals can also be resources, such as a pharmacist you trust. You may also be able to get second opinions from other doctors your friends or family see.

Your First Few Doctor Visits

Your First Few Doctor Visits

The first few visits are important for you and your doctor. They are the foundation for what you learn about HIV and how you and your doctor work together to treat it.

Your first visit to a doctor after your diagnosis can be an emotional time. Many doctors are sensitive and caring, and respond well to your needs. However, they have time constraints and are there to provide medical care, not necessarily emotional support. Friends, family, support groups, social workers and therapists can help with emotional support.

If possible, you may want to interview doctors before you make a final decision on who you want to see. You have the right to make sure you're comfortable with your health provider and to seek other help if the relationship isn't working for you.

It's important to get a thorough exam and medical history. Be open and honest about what you know about your health. Some conditions such as diabetes and hepatitis C can complicate treating HIV, so knowing about them early and talking about them helps to ensure continued health.

Writing questions down before your appointments can help you make the most of your visits. Consider finding a friend or an advocate to go with you to make sure your questions get answered. If you start seeing a new doctor, make sure you have your medical records transferred.

Below is a list of common tests your doctor may run to assess your health. It's a good idea to check in with him/her to make sure the right tests and screenings are done to give you the most accurate information possible.

  • Complete medical history, if this is a new doctor
  • Full physical exam
  • Blood pressure
  • Body temperature
  • Two CD4 cell counts and viral load tests, taken about 2 weeks apart
  • Genotypic resistance test, if viral load is above 1,000
  • Complete blood count
  • Cholesterol measurements
  • Blood sugar
  • Pregnancy test
  • Hepatitis B and C antibody tests
  • Full GYN exam, including Pap smear (and perhaps HPV test)
  • Anal Pap smear, if at risk for anal cancer
  • Sexually transmitted infection screening and history
  • Consider various vaccines, such as flu, hepatitis B or pneumococcal pneumonia
  • Oral exam by a dentist

Consider Your General Health

Many people find that in attending to HIV they also confront many other aspects of their lives. The most notable one is overall health, as good health can contribute greatly to positive outcomes when treating HIV. This includes addressing mind, body, spirit and social connections.


Every day, people make choices about their health through both action and inaction. Taking the time to identify and explore ways to improve your health will contribute to a strong foundation. Some of these issues are found in the section, "Ways to improve your health".

For example, stopping smoking can greatly reduce health risks within the first year or two of quitting. Certain foods (especially those high in sugar and saturated fats) can contribute to conditions like diabetes and heart disease. Stress causes chemicals to release in the body that affect the immune system. Engaging in safer sex prevents you from getting other sexual infections, and helps prevent transmission of HIV to your partner(s).

Depression is common among people with HIV. Recognizing and properly treating it can help you make better health decisions. Alcohol and drugs can harm the liver and other organs, and make it harder to take your HIV meds regularly. Studies show that certain techniques such as stress reduction can improve health.

Ways to Improve Your Health

This list is offered as a way to help you think about ways to improve your general health.

  • Understand that HIV treatment can be successful: newer drugs are generally less toxic and easier to take and tolerate.
  • Find HIV-experienced providers, like dentists, OB-GYNs, etc.
  • Keep up with your doctor appointments.
  • Get recommended vaccinations, including annual flu shots.
  • Be alert to symptoms and report them to your doctor.
  • Screen and treat OIs and other conditions appropriately.
  • Get other conditions under control through proper treatment, including diabetes, hepatitis, high blood pressure, etc.
  • Consider disclosing your status to others you trust.
  • Find a social network that suits you. Share ideas with others.
  • Improve your diet. Consider consulting a nutritionist or dietician.
  • Take daily walks.
  • Exercise in ways that work for you.
  • Get enough good sleep every night.
  • Find ways to reduce stress, including meditation.
  • Stop smoking.
  • Take steps to reduce or stop drinking alcohol.
  • Take steps to reduce or stop using street drugs.
  • Get into a harm reduction or recovery program if needed.
  • Ask questions of people you trust when you don't understand something.
  • Ask for help -- there are many resources available.

This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
See Also
"After You've Tested Positive": Table of Contents
Part One: Getting Informed About HIV
Part Three: Learning to Support Yourself

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